06
Apr
O Lord, You never let go!! (Part 1)
Filed Under (Philip) by Susan on 06-04-2009
Needless to say, the past week has been busy with doctor’s appointments,
phone calls, worries, and all!! Once a year, Philip has a “Craniofacial Clinic”
where he meets with all the craniofacial experts on his team. They include the
plastic surgeon, ENT specialist, audiologist, speech therapist, orthodontist,
and us as a family. They each do an individual assessment of Philip, then come
together as a team and discuss his health, his future, and any present
concerns. One unexpected discovery was a small amount of high frequency hearing
loss, which has never occurred over the past 8 years. The major concern
however, was Philip’s continued difficulty and discomfort with use of his CPAP
at night to treat his sleep apnea.
phone calls, worries, and all!! Once a year, Philip has a “Craniofacial Clinic”
where he meets with all the craniofacial experts on his team. They include the
plastic surgeon, ENT specialist, audiologist, speech therapist, orthodontist,
and us as a family. They each do an individual assessment of Philip, then come
together as a team and discuss his health, his future, and any present
concerns. One unexpected discovery was a small amount of high frequency hearing
loss, which has never occurred over the past 8 years. The major concern
however, was Philip’s continued difficulty and discomfort with use of his CPAP
at night to treat his sleep apnea.
Our Ear, Nose, Throat specialist met with us again this week and reviewed
Philip’s sleep study done after his nasopharyngeal flap surgery last August. He
discussed the possibility of removing a portion of his tongue to help open his
airway. After examining Philip, he concluded, however, that this surgical
intervention alone would not significantly open Philip’s airway to recover from
the apnea. His next option would be a tracheostomy, where a hole is cut into
his throat to open his airway (God please no). These were the options that he
could consider to help improve Phil’s airway. He asked us to meet with the
plastic surgeon to discuss the possibility of moving his jaw forward with
distractors and thereby move his tongue forward to open his airway.
Philip’s sleep study done after his nasopharyngeal flap surgery last August. He
discussed the possibility of removing a portion of his tongue to help open his
airway. After examining Philip, he concluded, however, that this surgical
intervention alone would not significantly open Philip’s airway to recover from
the apnea. His next option would be a tracheostomy, where a hole is cut into
his throat to open his airway (God please no). These were the options that he
could consider to help improve Phil’s airway. He asked us to meet with the
plastic surgeon to discuss the possibility of moving his jaw forward with
distractors and thereby move his tongue forward to open his airway.
We’ve discussed this jaw surgery in the past, I do not know if the time is
right for Philip to have this done, Now.
right for Philip to have this done, Now.
Another thing to consider is Philip has this scoliosis in his back. If he
does require jaw surgery now, which would have some extensive recovery time,
then what would we do about his spine? The curve in his back will also affect
his breathing if left unattended? We had hoped to take him to India for
medicine and massage to help reduce his spinal curve. This cannot happen if he
needs to have his jaw worked on now.
does require jaw surgery now, which would have some extensive recovery time,
then what would we do about his spine? The curve in his back will also affect
his breathing if left unattended? We had hoped to take him to India for
medicine and massage to help reduce his spinal curve. This cannot happen if he
needs to have his jaw worked on now.
I’ve never before felt so confused! I was so unsure of where to go and
what step to take. I want the best outcome for Philip, yet I don’t want
anything I do or do not do to adversely affect him. Where do I get any
answer?
what step to take. I want the best outcome for Philip, yet I don’t want
anything I do or do not do to adversely affect him. Where do I get any
answer?
Well, you already know where our answers come from. Thank you so much,
dear readers, for your prayers on our behalf. We also were reminded of the
scripture from IIChronicles 20, where King Jehoshaphat is surrounded by 3
different enemies. He will surely be defeated. He prays to God and says, “we
don’t know what to do, but our eyes are on you, Lord.”
dear readers, for your prayers on our behalf. We also were reminded of the
scripture from IIChronicles 20, where King Jehoshaphat is surrounded by 3
different enemies. He will surely be defeated. He prays to God and says, “we
don’t know what to do, but our eyes are on you, Lord.”
I do not know what more to do right now. We will try to work with our
sleep specialist to see if any other masks for Phil’s breathing may be
appropriate for him. This is to postpone the jaw surgery, if at all possible.
I am keeping my eyes on the Lord, I believe He will instruct us and guide us
with His own eye.
sleep specialist to see if any other masks for Phil’s breathing may be
appropriate for him. This is to postpone the jaw surgery, if at all possible.
I am keeping my eyes on the Lord, I believe He will instruct us and guide us
with His own eye.
More to come…. I love you all so much, Susan
